ava's 8 months old... neck update

ava practicing sitting up

i almost got it mom...

whoooaaaaaaaaaaaaaaaaaaaa.... maybe not ;)

she's starting to smile every time she sees the camera now :)

our St Patty's day gear and her ribbon that doesn't match ;)

she's so perfect :)

Ryssie posing

Ava and her Nicole Richie shades :)

had to throw this pic in there. isn't my grandma just so cute :) yes uncle jimmy you're handsome to :)

Dawson and his friend Reagan trying to get rid of suckers. its their delicois shop, hehe.

Ava's first time on a swing, she actually did love it!

she's so tiny the swing swallows her, lol.

Ava in her cubs gear... and of course sticking her tongue out

she loves to eat her toes. first thing in the morning she goes for them and makes a face, its so funny. they must taste better in the evening.

Dawson and Martini... the newest addition of our family.

Hey everyone, I've been slacking on the blog, I know. I can't believe Ava is 8 months old already. Time flys. I see why some people have lots of kids, they just grow to darn fast! Well as everyone knows Ava got a ct scan last Monday. We went to see the neurologist Friday. We got the news that she has something that's called baislar invagination. It's a lot worse than what I think anyone expected. I figured at worst her bones just didn't develop right and she would have to live with the tilt for the rest of her life. Well that's part of it, but it's much much worse than that. Basically the bones in her neck didn't form right and eventually they will grow into her spine and brain stem. They will monitor her via MRI every 6 months to keep an eye on it. There are also signs to watch for such as... her not moving her arms and legs much, fussiness, etc. Once this happens they will do surgery to relieve the pressure from her spine and brain. I guess the surgery doesn't fix the problem necessilary but takes the pressure off. We have no idea when this will happen. He didn't say that it never would, which scares me but that she may be 2 or 3, 5, or 9 or 10. No one knows. It's so scary. I have never been so scared in my life. Nor have I ever felt so helpless. I can't help but think what if something happens to her. What will I do. She's my life!!! This is so much worse than the other issues she had. I keep thinking how scared I was when I was pregnant of her having downs but in a way I feel she would have been better off, as weird as that sounds. The weird thing is though I guess some downs kids have this too so maybe not. This disease is so rare there's not a lot of info on it. They don't even have statistics on it. Crazy huh? I just don't know what to do with myself right now. I literally just sit around and stare at the walls. I try to do research but beings there's not a whole lot on it, I can only do so much. I'm going to try and write an article to parenting magazine. I'm hoping maybe a surgeon or someone with more knowledge can reach out and let us know something. I think right now Ava needs every ones prayers more than ever. I'm getting a 2nd opinion at Riley as well as meeting with a developmental pediatrician. Who knows maybe they will have some more information for me. Well here's her 8 month update.

*weighs 13 pounds (shes the size of a 4 month old)

*24 inches long

*still in 6 mth clothing

*has a closet full of summer clothes already, lol.

*loves the tv

*rolls over when she feels like it, even though she makes her therapist believe that she can't do it

*plays on her side when she's on the floor

*puts toys in her mouth all the time.... finally

*is trying to sit up, although its hard with her neck the way it is

*still doesn't eat but a few bites of baby food

*loves her sippy cup but doesn't necessarily drink from it

*starting to dance (looks like night at the roxberry with her poor neck, lol)

*does the bye bye thing with her hands but not when you say bye bye

*loves her bath

*cracks up at everything!!!

*loves to suck on her toes

*still has her thumb in her mouth most of the day

*smiles for the camera now

*always my happy sweet girl :)

Basilar InvaginationThis is a rare condition. To understand it, it, it is important to know how the spine works. The spine is made up of 33 bones, or vertebrae. These and the discs between them provide a passage for the spinal cord and nerves. The spinal cord iteself connects the nerves of the body to the brain. Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord. This is similar to Chiari malformation . That, however, usually is present at birth.SymptomsIf there is pressure on the lower brainstem, its first symptom may be death. Otherwise symptoms vary depending on whether the spinal cord, brain stem, nerves or their blood supply is affected by the pressure.Symptoms become apparent when the neck is bent. They include:Periods of confusion or conscious awareness that doesn't seem normal Difficulty swallowing or saying words due to loss of muscle control after damage to the nervous system (dysarthria) Dizziness Loss of sensation Pain in the back of the head Loss of the ability to know how joints are positionedTingling or numbness in the fourth and fifth fingers Tingling or numbness in the middle part of the forearm Tingling when the neck bends forward or backward Weakness or stiff,awkward movements of the of the arms and legs Patients will go into a pool and notice that below the belly button the water is not as cold as it is above.Complications from this can include hydrocephalus or syringomyelia because it blocks the flow of fluid around the brain and spinal cord.